We must have posted at the same time. Your story is a lot like mine. When I first got super sick, the docs couldn't find a diagnosis and said it was all in my head. I knew it wasn't, and my parents were helpful, but there was only so much we could do. So I just lived with it for 13 years.

Dh and I have been talking about doing things separately. It is very against his nature. I did shove him out the door to a glass camp for 3 weeks this spring. (He's an artist.) It's maybe the 3rd time he's ever done anything without me that was "fun" and not work-mandated (although I guess it was work-related).

Interestingly, this has given me the freedom to consider going to events and out with people he's not really interested in. So there is hope

Merika, YW, I think if you approach it in a loving non confrontational way with him, you will get your best results, or you could try the other method that works... Reaching the point of total meltdown(YOU) and flipping out on him and telling him you CAN'T do it anymore, he's gonna have to! (LOL!) I'm only half kidding on that one!

I've found with my hubby, that he wanted to help me more but I gave off the impression that I could do it all by myself and I didn't need him. Communication is key. I had to let him know that I do need him so very much and I can't do it all without him. Guys don't usually know how to communicate their fear and frustration in a way other than anger, so encouraging him to talk about it could be helpful, if you need a professional counselor to get you to this point though, there is no shame in that!

Good luck to you guys, I'm sure that a counselor will be able to help. It sounds like what you guys need is to communicate what you are feeling in a way that is a) more understandable to eachother and more constructive. And I'm sorry if I came off sounding too harsh before, it just annoys me when people are made to feel guilty for being sick. (That's one of the reasons that my parents divorced, because my mom was always sick like many people here have been and my dad just didn't have the patience to deal with it).

good luck, merika. it can be hard work, but we do what we have to do. the medical condition that sent me to a therapist in the first place was one that affected our relationship (it make sex painful, so the effect on the relationship comes about in a different, but not necessarily less profound, manner), and we're still working past it. it can be tough with a husband who is slow at changing himself and doesn't want to be introspective. he's a great guy, but we have our own set of expecations and assumptions and ways of going about things, and when the are at cross purposes, it gets hard! it's only been this year that I've been assertive enough to really put it to him about some things that are that important to me. (for instance, the amount of time he spends playing computer games - he neither seems to realize how long he plays them, nor that his choice to play them over finding something to do with me makes me feel like a convenience. it was hard getting him to understand it - it took many conversations and me to just state "then why am I here in the marriage". he didn't like hearing, and I knew he wouldn't, but he's a big boy and can deal with adulthood. ;-) )

it seems like it should be easier with a partner of many years (for us, we started going out freshman year of college, got married five years later, and will have our fourth anniversary this year), but you get used to being with each other so much that you don't look at how you've both changed over the years and how it affects the marriage.

I hope he'll be willing to work with you, and I'm glad your patient - this is definitely one of those things that will need it. ;-)

I feel really lucky to have my boyfriend... we were together before my diagnoses of celiac and still are, he told me in the beginning when I told him how worried I was how it might effect us... he said, its a diet, its just not a problem. I'm lucky because if I don't accidently gluten myself I feel really good, so I don't have any lingering problems.

He goes out of his way to help me... we eat out a lot and he won't just speak to the waiter, he often calls the restaurant ahead of time, speaks to the matire de, the waiter and asks if he can speak to the chef. When we were in Boston 2 weeks ago, as we walked around the city we'd find a place we wanted to have dinner in and we'd stop in there at like 3 pm so he could speak to everyone. Then we'd make a reservation for later in the evening. He's an assertive guy (which I love).

I don't however live with him and as I said I'm only sick if I get glutened so... but I still feel really lucky. I wish you all the best.

Hi I am not a marriage expert, but I have been married for 8 years and have 5 children. I dont have celiac disease and neither does my husband, but 1 of my children have celiac disease and I also have 1 with another disability. That is just a little history but my son was but on a gluten-free diet in Feb. and after a couple of months he got really bad again and I couln't figure out why and so I took him back to the dr and they put him on Singular and Zertec and within a week he was back to normal. They told me that he had esosinophilic gastrointitis. Which basically means he is allergic to baisically everthing. He still remains on a gluten-free diet. Maybe you can check with your dr about allergy meds on top of gluten-free diet.

I cant tell you about emotions and all of that but I do understand about the strain on a marriage due to illness. But all I can say is be patient and hang in there things will get better. Keep your head up. My mom told me when I was younger that husbands are just big boys in training (hahahah).

Tiffany-- I hope you are get some answers for your pain soon. Sex can be difficult enough on its own and it is an important part of a marriage too...

Thanks. It's under control at the moment, but it's not really the sort of thing you can cure, so it's a matter of maintenance. Interestingly enough, the gluten-free diet may actually be helping, in addition to all the other stuff I've done for it. Dealing with the psychological ramifications is the hardest part - any sort of significant problem that affects the interaction of partners can create it's own rats nest of problems to fix. But, as my yoga teacher says, "the journey is the joy".

Between that, the chronic knee problems I have, the asthma, and the gluten-intolerance, I certainly do sometimes feel a bit... broken, or like an oddity. But then I realize that everyone has something, and even those who have fewer obvious oddities here and now will have their own bridges to cross. We can only do our best to surround ourselves with people who are as accepting of ourselves as we are, and as we will be, as we need ourselves to be.

There is one aspect of your husband's behavoir, that stands out to me and changes the complexicion of the rest of your post. Namely that he complains about the food "every day" and yet eats it the vast majority of the time. To me this sounds, as though there is some layer of manipulation here. Most likely it sounds like he is try to play matyr on you or something. At worst, it sounds like he may be an extremely controlling type, who has at least some ambiguities about your recovery-lest he no longer have something to complain about.
I remember having nursed my mom through a very painful knee surgery as a young teenager. I was often terrified and had no idea, what to do. Scared to come home from school, over what I might find. Other family members had some behavoirs that were much like your husbands'. And frankly, I see no excuse for that.
The part about him grousing over your food is the most ridiculous part, by far and away. And it seriously makes me question the motives behind his behavoir.

My advice would be:

1) Until your health is on an even keel and if/when the marital situation is resolved, I'd strongly suggest that you do ALL your own cooking. If the former happens but not the latter, you can eat at restaurants or food cooked by friends that you trust. But DON'T eat anything that man cooks, until the situation is resolved.
At best it is a bad idea, to cede ANY control over such a diet to someone who resents the whole idea. At worst, you might be experiencing some level of sabotage, if you follow.

2) Get some medical tests, and get some high quality gluten-free vitamins if you don't already have them. Trader Joe's is a very good place, where all the vitamins are gluten-free and very high quality. I'd recommend combining the Men's multivitamin with the selenium, Vitamin C, a probiotic, and possibly some iron. (Yes, I use the Men's too, and I'm female.) Whatever you do make sure that the doses are reasonable, the vitamin is gluten-free (and up to all your other food problems), and that the iodine comes from kelp.

3) Make your husband help you in ways that don't involve cooking your food. Be assertive about it!!!

4) Get a marriage counselor who is good, but doesn't settle for BS, like so many do.

5) Get some support from friends. And try getting back into the workforce, as that may change your morale, and give you some more independence. If you have to pace yourself, try starting with temp labor. And keep as much control of your pay as you can. You should contribute to reasonable mutual expenses, but insist on keeping some in a bank account that only you can touch.

Tiffany,

I hope you and your husband realize that there are other ways to enjoy each other sexually, than intercourse. It might not be great to not have that option, but many couples have periods, where birth control isn't "covered", so that's a common way to deal with it. Some think that was a major reason why birth rates weren't higher in the late Middle Ages and ancient Rome.

Everyone,

I'm amazed that so many people have either endured so many health problems themselves, or in loved ones. Stunned. Frenchimama especially.

Merika, my heart goes out to you. I know what it's like to live with a man like that. Fortunately, as I grew and changed, my husband grew and changed and we have both finally reached a state of Joy and Acceptance in the other, warts and all.
We reached our 50th anniversary, still working on learning how to be in relationship. We're now married for 57 years and seem to have it finally nailed.

I want to applaud all who have responded to this post
Each of you has revealed a wisdom and understanding far beyond your years. If I had been just half as smart as you people, I wouldn't have had to struggle through so many issues.

Keep up the good work. Your loving, caring attitudes will be like bread cast upon the waters. You are all so very special. I'd love to sit down and have a nice chat with each of you, and I would come away enriched.

Merika, I wish you success in finding a Counselor you both feel comfortable with, and I pray that your DH will fully embrace the idea of Counseling.
Best wishes to all of you.
Maryellen

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diagnosed June 14, 2005 at the age of 77
blood test and biopsy

Proud to be an American

Rom 8:28- And we know that all things work together for good to them that love God, to them who are called according to his purpose.

This is an absolutely amazing thread for many reasons. Lately I have been thinking about my relationship with my husband a lot, with regards to my health. I have been having a lot of IBS problems lately and he has seen me over the past six years give up more and more foods, try more and more supplements, try different diets, etc. I have tried to not make a big deal about it lately but he now has been trying to get me to agree to an endoscopy or something. Not that I don't want one, but I have terrible insurance (or as I call it, "unsurance") and would be on the hook for the whole thing. Additionally, I have been referred to a rheumatologist (tomorrow) and have been attempting to facing the possibility that I may have a connective tissue disease.

He is amazing and always sticks up for me at restaurants, parties, even with my family. He comes up with creative ways we can go eat a meal with his mom - she never gets the food limitations right, so we now take meals to her house to prepare. It works.

In fact, I thought of him when Merika wrote about how she could mention that a coffee sounded good, and her husband would be all over it. Seriously, if I am even just sitting on the sofa watching TV with my husband, and mention something sounding good, he's off to get it. I mean, it's beyond the call of duty.

He likes to go out a lot more than I do, and I have had less desire to go out as time has gone by. He used to get upset and say that I *used* to enjoy going out with him, why don't I now? This was a big bone of contention for us. But, like Tiffany mentioned, at some point we were able to explain to each other it was ok if he wanted to do something without me - we'd probably both have a better time, in fact. And so that works really well for us.

I have had really bad relationships so I can fun the gamut of responses to situations. But I'm in a really good one now (nearly 8 years) and I couldn't be more thankful. I just hope that I am healthy soon or at least healthier, so that I don't feel like I'm constantly worrying him (and me!) And I really am putting all my positive thoughts into my appointment tomorrow - I am nearly more concerned about how my possibly having a connective tissue disease will affect my husband and my family than how it will affect me. I just feel like I've already been the person for several years who has been sick (at least 12 now) and can't fathom that getting worse.

Anyway, I really appreciate reading how others on this list have coped with difficult situations like these and my heart goes out to all of you who are struggling in less-than-ideal situations. Shout-out to Frenchiemama!

I have lupus and often times are too tired to do many things around the house, so they go undone. You are lucky your husband does them! It is very hard though to hear complaints about it though. I reccommend a website called divorcebusting.com. It is very helpful. It is run by a counselor named Michelle weiner-Davis. She has written many books on relationships. I recommend them all-maybe not all at once though. She is critical of counselors who do not offer solutions to problems. Instead she focuses on actually helping her patients by finding things that work for them. I hope this helps.

Time for my two cents, and I am going to say up front that I know where your husband is coming from. My husband has never been as sick as you -- thankfully -- but coming off 10 months of harrowing , horrifying illness with my son, I was just overwhelmed when DH decided to go gluten-free after his screening turned up "borderline" tTg numbers and a gluten-free trial diet made him so much healthier than ever I have known him. (and we'll throw in that I was sick, too, and so were both our parents)

Yes, I am happy for him. No questions about that, now I get to keep him longer!Yes, I love him. Always will. But you want the life you expected, sometimes. I want to not worry about him all the time. Spouses grieve too. Spouses, especially men, are terrified of what happens if you can't get better, what if you get sicker, why can't he fix what's wrong with you, why can't the doctors. Your whole security has been shaken. (Men are socialized to fix things, not caretake. To your average guy, caretaking doesn't feel like doing something about the problem.)

And then, of course, I feel guilty and stupid and small for being angry/sad/worried. But nobody ever asks me how I'm doing with this. Nobody feels badly that I eat pizza only when he's away, so I don't make him feel badly (or our son) so I'll never get to sit in front of my TV with one again. And I'm not saying they should, but it's not always a pile of laughs. But also, don't forget that some of this might have come up anyway, it isn't always celiac disease causing everything!

In a nutshell. I think, Yes, you should find yourselves a great counselor. Just a "safe" place to talk will be wonderful. Just the obvious committment to "we want better than this for ourselves" is comforting for you, and healing for him. We've been together 24 years and married 20, and you really do have to work sometimes, be creative, and be mindful that the things we love about our spouses are still in there.

Good luck~
Joanna

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Mom/wife to celiacs dx 12/03 and 12/04

Success is never final and failure never fatal. It's courage that counts -George Tilton

Your post compelled me to finally write something! Although I've read these posts for a long time, I have never registered and written. However, there is a book that I think might really be beneficial to you (and many others) who deal with Chronic Illness(es). It is called The Chronic Illness Experience: Embracing the Imperfect Life by Register, Cheri. (1999). I am in graduate school and was diagnosed with celiac disease after being sick for almost a year. This book was recommended to me by one of my professors. It is wonderful and although it deals with people who have conditions like MS, I did feel like it was truly applicable. It addresses a lot of the issues that you brought up in your post and thought that you might find some comfort, or feel like you can relate to what she is saying. Take care!